Gum on My Shoe

An open letter to a friend by Julie A. Fast Dear Friend, It really upsets me that I have to say no all of the time. I see that you are going to the coast and staying in a cabin while having a barbecue. That really sounds fun. A few of you went to New York last week for a vacation. That sounds amazing. Another friend often has a TV night with her friends and sleeps on the couch if she has too much wine. That sounds like fun! Some of my friends work a seventy hour week and it sounds exciting. Others go to sporting events and sit way up in the stands and tell me it was amazing! I want you to know how much I appreciate it that you ask me to do these things and then explain why I can’t join you. It’s the bipolar. I don’t ever use bipolar as an excuse for bad behavior. That is why we are such good friends. You trust me and I trust you. But I know that my inability to be as social as you might like can cause us some problems. If there is a party, I might say no or I might have to l...

The most anguishing dilemma with chronic illness is when you want to stretch yourself to do something you love, but you know it will challenge your health. A part of you hopes all will be well, hopes maybe you’re getting better, hopes this time you can leave your cage behind. So you do the thing. And like clockwork the giant rubber band slaps and snaps and zaps you back further behind than you were before. Going to the doctor doesn’t help. No answers there. Drugs can’t touch it. There is only the quiet endurance of rest for as long as it takes to regain some ground and pray your mind doesn’t go beforehand. And that your friends don’t leave. Fran Houston 3/22/16  

When I am depressed I yawn a lot. It’s as if I can’t take a breath or don’t want to. I sleep a lot and can’t wake up. And it takes forever to do one task if it indeed gets done. I just spent a month in Mexico where I pushed all my thoughts aside and intensely lived in the moment. Many things were wonderful, some not so much. Living alongside bipolar is not an easy thing to do especially when traveling. Coming home I began unravelling and everything stopped. I was really sick in body and mind. I second guessed everything. The only thing I hung onto was that I was really proud of myself to do such an amazing thing. There are those who don’t understand. I try to stay away from them. Understanding friends I cling to for they help me integrate in a healthy way. I continue to welcome myself home. Fran  

I am walking home from Tescos. It’s a little after 6 pm. I go to the store two or three evenings a week for groceries, or treats. Most times I would be pressing home, to be back in time for my Skype call with Fran at 7 pm. Not this evening, though. We’ve not fallen out or anything like that, it’s just she’s out with friends all day today while she’s having work done on her apartment. We have chatted on and off. The last time was about half an hour ago. Fran: Things are going well but I am exhausted. Horizontal day tomorrow. Marty: I’m at Tescos Fran: 1.45 movie Marty: Ooo what movie? Fran: My Cousin Rachel Marty: I will have to look it up. With J? Fran: Yes Marty: Cool We met up on Skype last night at 7 pm. We went through her checklist to make sure all the preparations were done, and she carried the laptop round the apartment so I could see the progress she’s made. We usually have another call later but didn’t last night, because there was still a lot for her to do. It’s a bea...

If you are unfamiliar with the term “spoonie,” it refers to an article by Christine Miserandino called The Spoon Theory , in which she describes explaining to a friend what it is like to live with debilitating fatigue. Her spoons analogy has been taken up by many who live with chronic fatigue, whatever its underlying nature or diagnostic label. Teresita Bauer is a spoonie who, in her own words, lives life to the fullest. She blogs about lifestyle issues for chronic disease patients. In her first guest post for us, she talks about her experience within the online spoonie community. Spoonies Online: Friends in Need … but Also Friends Indeed? The online community of spoonies is a great source of support and information. Have you ever found a friend there? Great! However, have you ever been hurt by someone online, someone you did not even know? Some people have a thick skin. Unfortunately, spoonies tend to be more vulnerable. Obviously, the spoonie online community offers lots ...

Stressing, striving, and straining never got me anywhere but sick. I was totally committed to my goals and achieving them at all costs. And I did. I was very successful as an electrical engineer, loved my work. I had the car, the house, the mate, the life. However, I had no balance, no boundaries, which basically translates into no wisdom. Inevitably, coupled with sickness, I lost it all. After many years of thrashing and grieving, beauty appeared. I found that tiny bit inside that was true. I listened to that and it grew. The same philosophy of striving can be applied to healing. Getting fixed, getting normal, getting free of whatever ails you. At all costs. There are a lot of people who are not shy to tell you what to do. I listened and clung to every word until I hit the wall with no money and no cure and was once again only left with that tiny little bit. This time I accepted my illnesses, even embracing them. I now saw them as teachers who were merely showing me how to care for...

I’ve never been one to cut myself off from my “normal” life when I am on vacation. I know people who turn off their mobile phones and put their emails and social media on hold when they are away. It’s not a matter of right or wrong, but that’s never worked for me. Connection is important to me and I’d feel I was denying myself something enriching and valuable if I were to turn my back on it all. As I like to say, I don’t take vacations away from my friends—I take them with me! I’ve always loved photography, and with my smartphone and a decent internet connection (a prime consideration when I am looking for new holiday destinations and accommodation) I can share my experiences more or less in real time, instead of having to wait until I return home to process and post my photos. It’s also important to me that I keep in touch with friends, especially those reciprocal relationships which benefit both parties and which have established regular, often daily or near daily, rhythms....

At the end of April I realized May would be Mental Health Month. I looked forward to seeing loving energy and attention being brought to those of us who struggle. Inside, my heart leapt. It wanted to contribute. It dawned on me that I could use my words and be vulnerable about things I deal with. I hesitated a bit because frankly that is scary and I would have to be brave. Here are all 31 of my posts gathered in one place. You can click the title of each one to see where I posted it originally on Facebook, and the comments it generated. Fran   Here’s my bit ‪#‎mentalhealthmonth‬ may 1 may is mental health awareness month.. more mind full more heart full less hurt full be.. ‪#‎endthestigma Here’s my bit ‪#‎mentalhealthmonth‬ may 2 Not sure how many of you have noticed, but I have not been posting much lately. When I am not strong I have few words and little faith. I withdraw because I feel no one cares about those more vulnerable. I work hard to stay strong but am ...

At the end of April I realized May would be Mental Health Month. I looked forward to seeing loving energy and attention being brought to those of us who struggle. Inside, my heart leapt. It wanted to contribute. It dawned on me that I could use my words and be vulnerable about things I deal with. I hesitated a bit because frankly that is scary and I would have to be brave. The first ten posts are here . Days eleven through twenty are here . You can click the title of each one to see where I posted it originally on Facebook, and the comments it got there. Fran   Here’s my bit ‪#‎mentalhealthmonth‬ may 21 Invisible illness doesn’t just mean you have an illness that can’t be seen, it means friends disappear and then you do.. ‪#‎endthestigma‬ Here’s my bit ‪#‎mentalhealthmonth‬ may 22 Sitting on my favorite bench on the back shore letting the ocean get inside me.. Taking responsibility. Taking strength. Early on I stopped blaming everyone and everything for my i...

At the end of April I realized May would be Mental Health Month. I looked forward to seeing loving energy and attention being brought to those of us who struggle. Inside, my heart leapt. It wanted to contribute. It dawned on me that I could use my words and be vulnerable about things I deal with. I hesitated a bit because frankly that is scary and I would have to be brave. The first ten of my posts are here . This page has days eleven through twenty. Days twenty-one through thirty-one are here . You can click the title of each one to see where I posted it originally on Facebook, and the comments it got there. Fran   Here’s my bit ‪#‎mentalhealthmonth‬ may 11 I get upset when people feel they are entitled to argue with my reality or tell me what to do or speak down to me because I live with illness. I have my own wisdom, my own intelligence, my own value system. When I first became ill I sought any advice from anyone in any fashion in quite a desperate way I’m...

At the end of April I realized May would be Mental Health Month. I looked forward to seeing loving energy and attention being brought to those of us who struggle. Inside, my heart leapt. It wanted to contribute. It dawned on me that I could use my words and be vulnerable about things I deal with. I hesitated a bit because frankly that is scary and I would have to be brave. Here are the first ten of my posts. Days eleven through twenty are here . Days twenty-one through thirty-one are here . You can click the title of each one to see where I posted it originally on Facebook, and the comments it got there. Fran   Here’s my bit ‪#‎mentalhealthmonth‬ may 1 may is mental health awareness month.. more mind full more heart full less hurt full be.. ‪#‎endthestigma Here’s my bit ‪#‎mentalhealthmonth‬ may 2 Not sure how many of you have noticed, but I have not been posting much lately. When I am not strong I have few words and little faith. I withdraw because I...

When you ask me the seemingly simple question “How are you?” I have no simple answer. I find myself boiling down my three complicated, chronic, incurable illnesses to mood, fatigue, and pain to make it easier for you to deal with. Sometimes I reply FINE. This is an acronym for Fucked up, Insecure, Neurotic, and Emotional. That way I can be gracious, and honest. The last thing I want to incur is worry, and upset you, because then I would have to take care of you. I have little energy for that. Over twenty years’ experience has taught me that over and over and over. Understanding the insides of invisible illness is not for the faint hearted. Perhaps the following will help bring some clarity and understanding. Here is the menu. Use it like a food menu where you pick and choose what you would like to have accompany you in your day. Know that not only is every day different, but these symptoms can change in a flash. Remember those of us who are sick don’t have a choice. Choose your s...

These things I do. They are not always me. Like when I talk too fast. Or too loud. Or post too much. Or think in loops. Or forget everything. Or pee a lot. Or look like I’m drunk. Or runny nose. Or can’t hear. Or can’t sleep. Or can’t walk. I am not trying to be difficult. And it’s not like I’m not trying. I have illness. This is a very short list of my symptoms and side effects. They vary day to day. Managing them is like riding a dragon. Please be kind. Fran  

Success with my test run of garlic mashed potatoes! It is amazing even that I am in the kitchen. I feel completely incompetent. I am petrified of cutting myself, which I did. I struggle to focus. I have to keep reminding myself of what I am doing and what’s next. Besides my neurons misfiring I am full of fatigue and everything hurts. None of this needs to be a problem. I just gently go in slow motion not pushing myself beyond the turtle speed I am at. The accomplishment feels monumental and need not be compared with those who are gifted. Npr helps. It offers a feel of intelligence and company. Fran  

Sometimes I am filled with fury igniting a storm of tornado, hurricane, or wild fire. The recurring themes are my many lives lost and my limited present life, not that there need be a reason. The storm razes all the tender shoots I’ve carefully cultivated. Only the closest of friends stand by as I am slinging shots and snots. They are not afraid. They know me. They trust. Funny how my inner landscape clashes with my outer. Wishing escape from my hated self I stumble out the door to clothe myself in city. Art music and familiar faces let me access a different part of myself while the storm rages on inside. I had good health and good fortune, and then not. I am well aware of my fundamental nonacceptance of what is but right now I shall pretend to be as others are. There will be pain from this. There will be fatigue. And there will be tenderness, embracing, and unquenching rest yet again. Fran